Let's face it, severe disability is not going to be everyone's first choice of lifestyle, but if that's what you're stuck with then there has to be a funny side. Join me on the ups, downs and sheer bizarreness of life in a wheelchair, a family, and a society determined to make things difficult. Guaranteed to make you smile (and groan). A good read.

Wednesday, 23 April 2008

In to the NHS

So there I was lying in bed on Saturday night. We'd had a pleasant evening, the boys had gone to bed and Polly and I had enjoyed a curry and watched TV and everything was fine. I'd dozed off but was woken by a dull ache in my left side. I did the manly thing and ignored it. Suddenly I'm sort of sick. I say sort of because what came up was clear but with flecks of blood in it: The pain grew worse. Polly woke up at the sound of me gagging and once she saw the blood realised I wasn't attention seeking. “Oh great”, she groaned. “We manage less than a week with out a medical crisis”. At the crack of dawn she rang the doctor and I stoically endured the pain and gagging. Croy-Doc, our out of hours GP service rushed into action and dashed to my sickbed by 2.00pm that afternoon. He looked at me cautiously and prodded my side and took my temperature and did the usual doctory things. “I'll call an ambulance”, he said gravely.

When the ambulance arrived, the paramedic and the technician looked at me lying in bed and gazed anxiously at the ventilator I was attached to via a hose and face mask. “Can he walk?” they asked hopefully. Once Polly had explained that I couldn't walk, stand, hop, skip or jump they decided to bring in the stretcher bed. My friend Stewart, who is a police officer and regards the other emergency services with respect but with the suspicion that they are only doing the job they do because they couldn't get into the police service, pointed out that they might get the thing in but they wouldn't get it out without tipping me on to the floor. The corners were too tight. Eventually I could stand it no longer and said that I'd get up and into the wheelchair. (You see I'm THAT brave.)

Once in the ambulance they spent several minutes securing the wheelchair. “There”, they said with satisfaction, “That's not going anywhere.” I, on the other hand, was totally unsecured. “What about Stephen?”, asked Polly. “Hold on tight,” I was advised. I did.

St Helier, our local NHS trust hospital, was built in the 1930`s It was originally an impressive art-deco structure, perched at the top of Rose Hill. Viewed from the south it was quite spectacular, so the council built a road on the north side, so now all you see is the back of the building, a rambling jumble of extensions and incongruous new add ons. I was guided into the ER and had a canular fitted to my arm so they could take blood. After a while we were moved to the Clinical Assessment Unit from where I was sent to X-Ray and had an Echo-cardiogram, labelled Nil by mouth and left to watch Polly gleefully drink a cup of tea. Sometime later a doctor came to say they would be admitting me to ward B6. My heart sank. Eight years a go I had nearly died in ward B6, if my sister had not been visiting me and noticed I'd virtually stopped breathing, I would not be here writing this. Polly would regularly come in to find several doses of medication placed out of reach on my locker. The nurses would sorrowfully tell her that I wouldn't take my medicine, “He can't move!” she'd explain again and again. “He didn't say anything,” they would counter. “He has a tracheotomy! He can't speak.”

Eight years a go the ward was filthy. There were specks of blood on the floor and walls. Suction tubes that are inserted into the lungs to remove gunk were used and reused, equipment didn't work and patients with infectious diseases were placed in beds next to patients with pneumonia. I had been moved to the far end of the ward, presumably to get better on own. Instead I caught double pneumonia. Eventually I was transferred to the Royal Brompton Hospital in an ambulance complete with blues and twos.

Eight years later the ward had changed beyond recognition. Gone was the huge single room lined with beds with a nurses station in the middle. Instead the ward is divided in to bays and single bed rooms, the whole place is decorated in a subtle shade of anti-suicide green. The place looked reassuringly clean. I was allocated bed 10, one of four in a bay. They took away the Nil by mouth sign and I was allowed a much needed cup of coffee.

Hospitals are not designed for disabled people. No, it's true. They are designed for the sick, the frail and the injured. Disabled people upset the system. They find it difficult to distinguish between the disability and the illness you've been admitted for. A case in point: my ventilator. I use a machine called a BiPap. It pushes air into my lungs and then negative air pressure draws the air out, the result is that the base of the lung is inflated and carbon dioxide is expelled. Ward B6 is the hospitals specialist Respiratory ward. The nurses are trained in using all kinds of ventilators. Except, apparently mine. The nurses looked at it with a mixture of curiosity and suspicion. The control panel looks as if it has been stolen from the bridge of the Starship Enterprise and the mask has a tangle of webbing that can make the Gordian knot look like something tied by a brownie. The nurses begged Polly to stay and set it up.

About Me

I'm a wheelchair bound father of two who stoically and uncomplainingly endures a rare form of the muscle wasting disease Muscular Dystrophy. I've written a series of comedy sketch books and bits and pieces for TV. I've written for and run a small touring theatre company and once accidently co-wrote a number one hit single. The last year has seen a marked deterioration in my condition and so as a means of inspiring those who come after me I'm committing my thoughts to the world wide web.